A Mixed Methods Approach to Exploring Disability Identity in Adults with Acquired Brain Injury

Abstract

Background: Disability identity is the extent to which a person incorporates disability into their sense of self and connects with the disability community. The construct has been associated with increased psychological well-being, resilience, and engagement in disability advocacy, but remains understudied in rehabilitation. Adults with acquired brain injury (ABI) experience significant disruptions to their sense of self, but little is known about their disability identity development or how rehabilitation professionals can support this process. No prior research has examined the construct in this population through the lens of a disability identity framework. Objective: The aims were to describe disability identity in adults with ABI, explore key influencing factors associated with disability identity in this population, and identify strategies for rehabilitation professionals to support disability identity development. Methods: Guided by Forber-Pratt and Zape’s (2017) Disability Identity Development Model, an explanatory sequential mixed-methods design was used. In the quantitative phase, 107 adults with ABI completed an online survey assessing disability identity along with personal, impairment-related and environmental factors, and occupational identity. Data from the survey were analyzed using multiple linear regression to identify potential relationships between disability identity and the various factors. Following quantitative data analysis, purposive sampling of survey participants was used to recruit 17 participants for four focus groups. Focus group data were recorded, transcribed, and analyzed using a hybrid approach thematic analysis. Two coders used an iterative coding process to collaboratively develop codes and subsequent themes. Integrated analysis compared the results and focused on how and to what extent the qualitative results helped to explain the quantitative results. Results: Disability identity scores varied widely and clustered in the “low” range. In the full regression model, younger age, racially marginalized status, greater impairment visibility, and greater impairment severity were significantly associated with higher disability identity; self-reported environmental barriers did not account for additional variance in the model. Occupational identity was also positively associated with disability identity. Qualitative findings characterized disability identity as a dynamic process that often begins with grief and the processing of difficult emotions and is strengthened through connection with the disability community. Participants described that impairment influences disability identity through interactions with social and built environments, that other marginalized identities shape how disability is understood, and that re-engagement in meaningful occupation supports identity development. Focus group participants also identified two main priorities for rehabilitation: improving disability-affirming care and greater disability education amongst rehabilitation professionals. Limitations: The cross-sectional design cannot assess change over time or support causal inferences about the relationships between disability identity and the factors examined. The sampling method for the survey and sample demographic background may limit generalizability of quantitative findings. Focus group participants had underrepresentation of individuals with lower disability identity which limit the transferability of qualitative findings. Findings should be interpreted with consideration of measurement limitations, including the four-item assessment of environmental factors and the need for further validation of the Disability Identity Development Scale cut scores. Conclusions: Disability identity after ABI is a dynamic process that often begins with grief over the pre-injury self and the renegotiation of internalized ableism, takes shape through the interaction of impairment-related, personal, and environmental factors, and is strengthened through community connection. These findings extend Forber-Pratt and Zape's (2017) model to the context of acquired disability and suggest that rehabilitation can support disability identity through disability-affirming care delivered by a more disability-educated workforce. Recognizing disability identity as a meaningful rehabilitation outcome beyond functional recovery has the potential to improve well-being and participation for adults with ABI.